Archive for June, 2009

In less than 24 hours I have an appointment to get my hair cut real short, so that when it falls out, it isn’t such a demoralizing shock. Except now……..I am getting a little anxious about this. Gee….am I really going to lose my hair? Maybe since I am only having Taxotere and Cytoxin as my chemo-concoction, the hair will “hang on”……..do you suppose? Maybe since I only had a few crappy days of side effects from chemo, I’ll be lucky about the hair, too.

Had no idea that I would be so anxious about this, and I am upset that something as superficial as hair is causing me this grief.

But, on the other hand, losing the hair really kind of makes the whole “C” experience more real. At least once a day, I look at myself and think, “wow, I still can’t believe this is happening to me.” So. Maybe doing the cropped cut is good, to force me to accept it all (of course the mastectomy went a long way in forcing “acceptance” too.)

Well, usually if I wake at this hour it means I am having a problem with anxiety, and I’ve found the only way to get it out and return to lullaby-land is to write bedside until the issue is resolved. This time though, the image/thought that I have circling ’round my brain is Pie and images from the movie “Field of Dreams”. You know, the Kevin Costner movie, where he hears the whispers that begin with, If you build it, he will come…………….” So, what is that supposed to mean? If you bake it, they will come?

Now, before this whole cancer carnival became my “new normal” I never-ever woke up in the middle of the night. Honestly. Never understood insomnia. But I did used to wake up early in the morning with plans and visions of the perfect lesson plan for school, a fabulous art concept, big design dilemmas resolved neatly, etc. So I understand sleep as the opportunity for my brain to relax, and come up with great concepts without the “conscious-me” meddling with the subconscious brains’ much better plan.

So yesterday was day nine, post chemo, and was about as good of a day as I am gonna’ get all summer. I began with meeting Tahree at the Toledo Farmers’ Market at 9:00 and she was so thoughtful to get there early enough to buy me some beautiful fresh spinach before the “greens guy” was all sold out. Yea! I had been craving spinach for weeks now, more later on how it landed on my table. We talked for more than an hour while eating some kind of really great fresh raspberry pastry from Ackerman’s raspberry stand. I came home, and had to rest for an hour for my next big adventure.

At noon, I pulled a “cancer-card” and utilized one free salon service at a nice little place in Toledo. For the next two hours I had a manicure and “spa-pedicure” while in a kind of aggressive massage chair. I mean it…..the massage rollers were so insistent that I thought they were going to push me out of the chair at first!! Eventually, I figured out how to position my spine to kind-of enjoy the pedicure. During my manicure (since I had a captive audience I was actually paying to sit across from me) I had the opportunity to practice my spiel of breast-health-my-story-importance-of-digital-mammograms. That was good. She seemed to hang on every word, and thanked me three times for educating her on the importance of digital imaging. (one down, thousands to go)

Came back home, and of course, had to kick back again from all the activity, this time in my fabulous new “zero gravity chair” on the back deck, in the shade, listening to birds and watching Lou attack the overgrown flower bed. Good job there! Kids were even still gone (at the pool with coolPaula ) so it was completely relaxing. Eventually, the kids came home, I got up and pruned a few more of the Tropicana rose bushes that had been horribly neglected all spring with new clippers in one hand and an ice cold Negro Modela in the other. Doesn’t get much better than that.

Soon I began dinner, a combination of donated food, and a little bit of original cooking. The donated food came from my new friends, Linda and Helen, both have had Breast Cancer. (I think I am going to adopt them as sisters.) On Friday, they went miles above the normal realms of friendship and brought easily more than a weeks worth of food for my refrigerator and freezer. One of the things they made for us was this fabulous lasagna. So dinner was this sausage lasagna, garlic bread and my favorite Spinach/onion/bellpepper/Calamata Olive/and Feta Cheese saute** with fresh corn, cut off the cob on the side. Lou pulled out a great Cabernet, and we had a terrific meal together. Kids didn’t whine too much, and ran off to play video games as soon as they were done eating and we had some time alone. Priceless!

After dinner, I took Charlie to a sleepover at coolPaula’s house with Henry, and got to see her sister, Kathy, too. So, the day ended with a bottle of wine, comfortable seating outside, conversation with coolPaula and Kathy, and as a bonus….their mom, Martha joined us for a while. It was a trinity of fabulous women, and I got to be there. We talked and laughed until quite late and I had to get back home, lest Lou think something happened to me in the three blocks between our houses.

So. There it is. I’ve written all about my wonderful day yesterday, and I still don’t know why Pie+Field of Dreams woke me up. If it makes any sense to you, please let me know. I am going to try to sleep now so I can go hang with the Unitarians again later this morning.

**if anyone would like the recipe, just ask, I’d be thrilled to post it!

Well,….all’s well physically anyways. I am out of the achy and shaky part of the experience for this round of chemotherapy, and all I have is still a bit of fatigue and a yucky taste in my mouth. As long as I don’t try to do much, I am pretty good for about 5 hours of light activity before I have to lay down and chill-out. I seem to be past the “be careful to monitor every stinkin’ little physical symptom” state of mind, thank goodness.

On Friday afternoon, Joan, my U of M nurse practitioner called to see how I was doing and explained a few things. The reason the achiness was so intense is because you begin chemotherapy with nice and healthy bone marrow. The action of chemo destroys some of your dividing cells of the bone marrow and to go from healthy to “compromised” is dramatic and significant for your body. Typically, in subsequent infusions the severity of the achiness should be slightly less, but may last for a few hours or days longer. The fatigue, however, is just what it is. It will probably get worse, last longer with each infusion.

It has been challenging to find a place to remain “grounded”. I mean, to constantly be focused upon your every physical sensation, monitor it, evaluate it and act…..whether the action be stop activity and lay down, feel discomfort and decide if it warrants medication, or take a run through the Internet to ferret out an answer. At the same time, try to be a “mom”. Of course, something will suffer, and I know that I am pretty weak on fulfilling the mom duties. :^( I seem to have zero patience for whining and fighting and fussing. I mean it. I wish I could ignore it better. In fact, I probably make it worse, by my actions I’m sure. Nothing to be proud of, that’s for sure.

Of course, the whole uncomfortable, tight, lopsided, short of skin and not too attractive chest is still part of my life. The area under both arms is still really uncomfortable by the middle to end of each day, and I have to try to put it out of my mind at times. I think I need to do more research on the “neuropathy” issue. If I understand it on a cellular level, I seem to deal with it better. But damn, it can get so annoying on some nights………I get agitated quickly and go straight to the meds. I don’t think this is the best way to deal with it though. Fortunately, on July 9th (my next chemo day) I have an appointment with a Physical Therapist who works with a lot of Breast Cancer and Lymphadema patients. Maybe she will have some great exercises for me to relieve this kind of chronic discomfort. I wish I had learned Transcendental Meditation years ago when I tried so desparately to incorporate that into my life. Iwish I could just mentally take my brain to a higher level where physical discomfort…….isn’t so annoying. I’m sure it is possible, I just don’t know how to do it. Plus, I am impatient. I want physical enlightenment now.

Now that I have done all this whining, my mind jumps to really how lucky I am. Really. I could have it so much worse. I seem to be holding up under this gradual poisoning pretty well (so far). I’m so grateful for not having any nausea. I’ve made deals with my body to promise to rest when I am tired if we can skip the whole puking part of chemo. So far, that has been a successful strategy.

I am also incredibly grateful for my friends who I have come to think of as my “new family”. I couldn’t do this without all of the people who have brought food, called, helped with the kids, sent e-mails and snail mail and little “care packages”. Both Lou and I are so grateful for all of the support. I wish I could come up with the words that adequately express my gratitude. I appreciate you and love you all so much.

So here it is Wednesday, 6 days after my first infusion of chemo-drugs, and I have been up and down on the roller-coaster a few more times.

Sunday night and monday provided quite an experience for my body…..pain deep in my bones, at moments, even breath-taking, but all fairly tolerable due to the transient nature of the sensations. Each point of pain only lasted for 5 seconds or so before it moves on to attack another innocent section of my skeletal system.

On Monday I choose to accept, embrace, and rise above the assaults. Then on Tuesday, a respite of sorts. Pain that was merely annoying, not challenging at all. It seemed my nervous system traded fatigue for pain, which is a perfectly acceptable deal to me at this point in the game. Made me think the worst of the side affects for this round of chemo was behind me. Today (Wednesday) I even got up and resumed my promise to exercise, and walked for 15 minutes early this morning. Still felt good after that, so I tended to my neglected roses with my new pruning shears for a little while. Amazingly, still had enough life in me to help Super-Unitarian-Friend-Marilyn completely clean out my refrigerator. That was good therapy–having a neat and sparkly refrigerator always makes me happy (I know that sounds wierd, but when you love and work with food like I do, the fridge can be a wild place at times…)

All this activity pooped me out so I just took it easy all afternoon. The boys had a play-date at the pool for the whole afternoon, so I had lovely peace and quiet. Thought I might actually have it in me to really “prepare” dinner, but sneaky stinkin’ chemo came up and bit me big time . This time, real pain deep in the back of my hips………..and it is not transient at all.

I am trying really hard to be patient, but I am so discouraged tonight.

Yuck. That is how I feel. About 36 hours ago, it was like hitting a wall. I went from being “OK” to a serious achiness in my bones and a metallic taste in my mouth. It is so very strange to lay perfectly still in my bed, and feel…..sharp pin points of pain, hopscotching around my body……. in the arch of my foot, then to a low rib, jumping to my hips, and the hard ones, a pain line from the back of my knees up my thighs.

I lay perfectly still and wonder about the cellular nature of chemotherapy. Is this unpleasant sensation the meds destroying dividing cells in my bone marrow? And with chemtherapys’ slash and burn battle plan, I sure hope it is finding the intended target….those stupid cancer cells, too. It sure seems like a lot of collateral damage must be incurred to get to the goal of eliminating cancer.

And in the meantime, what the hell am I supposed to do? Am I supposed to stop everything, and be still, or just move through the pain, and try to eek out a few moments of life in the day… I must not be too bad, because I find I am really annoyed with just laying around. I desperately want to go to the park, do things with my kids. Last night Louie asked if we could ride bikes to the pool, and I felt so sad. Yea, last year we rode our bikes to the pool, but this year…at least this week….it just is not possible. The energy and skills necessary for that simple and fun exercise are beyond me, today anyways. The best I can do is drive the five blocks and plop myself in one of the lounge chairs. And I am grateful for that.

Well, today is Father’s Day, and I felt a little bad that all Daddy got was a simple poached egg breakfast, cards and gift cards…and then he was on his own. Actually, I’m glad I could at least pull that together.

Because I am pretty good at following directions, I got up and walked this morning for 20 minutes to test the hypothesis about daily exercise keeping the nausea at bay. (So far, we are winning that war!) But by the time I got back home, all I could do was just sit on the front porch. I really wanted to go to church, but it was more effort than I could muster, so I just read the Toledo Blade from cover to cover.

Eventually I got up and puttered around the house doing laundry and other mundane chores, but by early afternoon, I was pooped out again. I guess the “fatigue” is a real side effect of poison in your body. I hope it stays at this level and doesn’t intensify, but that is not what I have been led to expect. :^( But, I guess the good news is that if you really listen to your body, and rest when it asks you to, you get a little reward of a little more energy.

So, I guess that is the new normal for this week anyways…..a few hours up, and then a few hours down.

Got up this morning and took a 25 minute walk, not exactly a power walk, more like a brisk stroll. I promise my body to exercise every day if it promises not to puke.

I also made a rhubarb custard pie to take to a family get together in MI. Unfortunately I don’t have the stamina, and upper body muscle strength yet to make the crust, too. Just dicing the rhubarb and mixing the ingredients in the BIG bowl, then transferring to the “store bought crust” was enough work to send me to the couch for a nap. But at least I made the pie. It has been the little things that have made me sad. Last week I finally got the nerve to inspect my rhubarb patch and got teary eyed because I didn’t even have the strength to pull any out. One of my favorite things is the annual late Spring rite of making killer rhubarb pies. But eventually, with Charlies help, we got some rhubarb in the house, and finally the pie was made.

Well, it has been more than 24 hours since my first infusion of Taxotere and Cytoxin, my personal medical recipe for Chemotherapy, and all is still well. I had a good nights sleep, woke up really hungry, had breakfast and coffee, and still felt well! This morning I actually gave myself an injection (yes, that is with a needle) of “Neulasta” , a drug which is used to stimulate the bone marrow to make more white blood cells. According to my medical literature, “chemotherapy may reduce the body’s ability to make normal white blood cells, and thus fight infections”.

Also in my IV last night (in addition to the “anxiety medication” ) was a long lasting antidote for nausea, which is supposed to last for 3 to 4 days. So I am going to start crossing all my fingers and toes on Sunday, plus I have a ‘script for meds specifically for nausea and the number for Jane, my nurse practioner extrordinairre, along with her “pager’ number. I have been told to take the drugs at the very first queasy moment, and then call them if I start to “hurl”. They want to know! Cool! At U of M puking is serious business to be avoided, and I have been assured that if it becomes a problem, they care, have other drugs to try, and will work to fix it.

Another side effect I’ve been told to expect is fatigue…..well, that has been a companion for awhile now, and that one is fairly easy to fix. Although when I took a long nap a few days ago, Louie woke me up with the fascinating news that he had just learned how to make a stink bomb with a tennis ball, lots of dog hair, and a sparkler for a fuse! Thanks a lot YouTube! So now I am a little wary with this sudden interest grooming Kia, the dog……..

Now, “chemo-brain” is a more elusive potential side effect the medical professionals address more warily…….they suggest that it is fleeting for some, nonexistant for others, and perhaps an extension of one’s typical “space cadet” status…. Oh dear. I have to write lesson plans for 18 weeks for two new classes I am teaching next year. I feel added pressure now to get to it, before any of these side effects intensify…….which apparently all have the likelihood of culumitive annoyance…..the longer on chemo, the worse the side effects get.

But, at this point in time, these are only my “worries” not my realities. I will follow the directions of the nurses, number one of which is a minimum of 15 minutes of exercise a day. (Cool-Paula, are you listening? That means a walk tomorrow morning!)

BTW, my hand where the IV went in, is still beautiful. Dr. Schott, you were right, your nurses (in this case, Nurse Nancy) are very very good!

Funny thing that happened yesterday at the Cancer Center. Suddenly I felt kind of luckey….a lot of people who appeared to be younger than me, looked to be a whole lot worse. And then there were the children with pretty little bald heads. Then you know getting cancer is just something that happens. It is my job to get over it, and work to help educate others and support those who support us.

Well, here I am in a lovely and comfortable bed at U of M Infusion Unit, and have just received the cytoxin in my IV line. This is my second IV drug, I began at about 5:15 pm with Taxotere, but immediately had a flushy-throbbing reaction. The quick reaction time of the nurses is quite admirable…… nurse Nancy came in quickly to stop the infusion, and called Dr. S for further directions. She was back within ten minutes and added a counteracting med to my line and then s-l-o-w-l-y resumed the infusion. That time it was OK.

So far I have watched a few videos on “TED”**, dozed off a little, and talked to Lou and Bill, my “chemo-buds” for the day. This, so far, is not too bad. I think the next few days will tell how well I handle the potential side effect of nausea. Jane, the nurse practicioner for my Doc made it very clear to me that if any of my nausea meds don’t “do the trick”, I am to call her right away so she can prescribe something different, something that will work for the unique set of systems that is me. This exact sentiment has been reiterated several times throughout the day, if I feel ANY side effects, I am to call, they want to know. I don’t know if all medical centers are this responsive to their patient needs, but I have a lot of positive things to say about my experience here so far at University of Michigan.

It is about 9:15 and Nancy said I am almost done so I will publish this post. So far, so good! Keep your fingers crossed for me!!

By the way, Nancy had no problem putting the IV in my vein. She easily choose a vein in my hand, and painlessly inserted the IV. NO PORT NECESSARY (so far anyways.)

**TED – A great site that “Cool-Paula” turned me on to. Riveting talks by remarkable people, free to the world. Go there! http://www.ted.comYou’ll thank me for directing you there!

Well, I spent time talking to friends today, and I think the tremendous anxiety I felt overnight and this morning about beginning chemotherapy has subsided a bit. I know in the end that all will be OK, even if it might not be pleasant. I continue to be amazed at how the universe has turned for me. Today, the right words have come from the right people at the right moment. So….I will continue to have faith.

Oncology Nurse Marleen called from U of M late this afternoon, just to ask about any questions I might have, and to tell me what to expect tomorrow (Thursday.) I am so glad I made the decision to go north.

Tomorrow I will have my husband, my AW friends necklace (“the rosary”), the good luck charms from California, my prayer shawl, and all will be fine as long as I have faith.